My anti-fungal medication has been rough. Basically, my entire body has withered up like a raisin, my liver is confused as hell, and I look like death. My boyfriend recently made a joke about the movie Alien, I think proposing a Halloween costume he saw online that involved a pregnancy belly, doll parts, and red paint. My brain was off in La-La Land and the story has now solidified in my mind as him saying I look like some bizarre and foreign swamp creature.

I have been chuckling to myself almost nonstop. I am a complete and total shit-show lately. This year has been a rough stretch, and the addition of anti-fungals only made things worse. And yet, there is such incredibly release in reaching the point where you can laugh at yourself.

My hair is falling out to the extent that I look like my mom’s childhood doll, and the few remaining strands look awfully drab. The carpetbags under my eyes would make Mary Poppins proud. The dry skin on my face has repeatedly overpowered my prescription moisturizer and homemade oil mixes. Dry lips have led to a perpetual split lip and random instances of blood dripping down my chin. Sexy, I know.

Moving south of my confused little head, my resting heart rate is too high and my blood pressure is too low, but my blood-pump is chugging along like the Little Train That Could. My lungs are filled with calcified fingers that continually reach up to tickle my throat. Whichever organ resides beneath my right rib cage is doing hard time, continually forgetting that its encased by stabbing barbed wire. My liver is method acting the role of Yellowstone, shooting massive amount of bile upwards through my body. My intestines have been stripped of all moisture, making restroom trips a dreaded activity. To much information? Sorry, not sorry.

My joints are achy, my spine is stiff, and my head throbs each time I bend down to beat the five-second rule. Whenever I look in the mirror, I’m reminded that my six-pack-in-progress has been overthrown my the Muffin Marauder. The fungus has begun forcibly exiting my body through the tiny pores in my skin, creating a series of bizarre open lesions on my arms, legs, and face. I legitimately look like something out of Alien!

But don’t fret! I’m under the care of multiple medical professionals, and every single one is acutely aware of everything, from the emerging sores and rectal bleeding to the headaches and long-lost sanity. They’ve reminded me that prior to my re-diagnosis, my primary care doctor surely thought I was a hypochondriac. But now, with “valley fever” scrawled upon my forehead, every single miserable ailment suddenly makes sense.

As terrible as the symptoms are–and yes, everything listed above is 100% true–I’m grateful that I have a sense of humor and that my boyfriend has helped me find reasons to smile, whether by (not) calling me an alien or bringing me flowers on the days where crying seems like the most reasonable response, and my mom for always making time to talk when I need a friend. I’m grateful for my awesome infectious disease doctors who don’t even bat an eye when I begin listing all of the bizarre manifestations of cocci.

Though some of the mildest symptoms, the hair loss, chapped lips, and excessively dry skin don’t do much to help my self-esteem. Since I’ve been on the on the anti-fungal medication for over three months and will be on it for at least another six, I was invited to participate in a clinical trial addressing the aforementioned issues. I have some concerns about the commute and privacy as it relates to the future sharing of my medical data, but I’m hopeful that this opportunity could help me find a small amount of relief.

I was also informed of a second study to assess severe cases of valley fever in previously healthy individuals. Hey, that’s me! This clinical trial seeks to characterize the genetic predisposition of disseminated coccidioidomycosis, particularly looking at mutations in the IFNy/IL-12 pathway. Again, I don’t want “genetic mutation” written all over my medical records or affecting future insurance costs, so participation is very much up in the air.

I look a bit like some mutated extraterrestrial right now, but so what? Maybe–just maybe–I’ve been equipped with some genetic mutation superpower that will set me up to save the world! Or not. A girl can dream.

Maybe, at some point in the not-so-distant future, I’ll begin to look more like myself and less like a pocked and sleep-deprived blobfish. I’m crossing my arthritic fingers and holding my breath (at 85% the capacity of the average person my age!) that I’m moving in the right direction. As the tried and true cliche goes: Life is tough, but you’re tougher. Keep smiling, y’all! Life ain’t so bad, and laughing at you situation will almost certainly ease any tension.

Ooh… I feel so bad for you, but glad that you are trying to keep a sense of humour… That is important, to keep your immune system fighting. Fingers crossed for the trial, hopefully something good will come out of it. I do understand your trepidation though. So difficult to go public, but sometimes that helps other people in similar circumstances and of course, the researchers will be focused on getting good results. I hope all goes well. 😊👍❤️

Thank you, Colette! I spent a few months in a frenzied panic around the situation and that did nothing for me, so I’m finally learning to embrace the situation (and my body) as it is. I’m still going to do everything in my power to support recovery, but I’m trying not to let the setbacks and obstacles drag me down anymore.
I completely share your sentiments about helping others through research. Approximately 20 individuals globally receive my diagnosis annually, and only ~5 did not suffer prior immunodeficiency. I’m 1 in 1,526,563,865… quite literally one-in-a-billion. If there is *something* such as a genetic mutation that made me particularly susceptible, maybe that information could be useful to others.
Along with some privacy concerns, my research has repeatedly found that no vaccine exists because the CDC has been researching use of cocci as a bio-weapon for numerous decades. I’m likely just being paranoid, but I would be devastated if the information I provided was one day used to harm others. I’ll need to mull over it, but I think it may be worth any risks if it means I could help (or even save) others. Thanks so much for the well-wishes and love! ❤

I’m sorry to hear about this, hopefully you’ll feel completely yourself soon enough. I want to try to cheer you up with a story of my mother’s sense of humor that I’m so deeply thankful to have had passed down.

The golf ball sized tumor near her brain had applied enough pressure one morning to lead to a stroke. She worked in healthcare, so she had no doubts about her condition or that it was, in fact, a stroke. She woke my grandmother and I up and asked us to call an ambulance. This would be the last time that she would set foot in our home, and she wasn’t going out without a few laughs.

Her face was sagging on one side, I can’t remember which, and it was clearly stuck that way. The EMTs arrive, two young men, and they start asking serious questions, but she is not taking it seriously at all. I don’t blame her for trying to be the comedian in her position. I ask that they rush her out and I’ll answer any questions they have. Before she can be pulled out of the house on a stretcher, one of the EMTs asks, “Are you sure it was a stroke?”

She answered, “No, I’m doing this to my face on purpose to look cute for you boys. Now take me away, baby!”

Find any reason to smile today and it’ll help you through the worst of it. I hope that something like this might help.

Steven, thank you so much for sharing that sweet story of your mother. I really admire those people who find a reason to laugh, even in the most trying situations, and your mother sounds like just that. 🙂